#3 For those of you who have just joined, Shane, Sierra and I moved back to Australia from England for a steady income and so we could have help from our family in February 2008 and have since done 4 trips back to the UK and Europe to get the best possible care for Sierra. While care in Australia exists it does not compare with what is offerred OS.
December 08: We returned to Europe for Stem Cell treatment, more Physio and to see the Eye Doctor. The trip was a success and there has been some significant improvements!
There has been a reduction in spasticity/tone (tight muscles) all over her body. Her hands are now frequently open and relaxed instead of being in tight fists. We can bring her arms forward to touch her elbows together and can also take her arms behind her in a full range of motion for the first time. We’ve heard the joints clicking as they open up. Both the physiotherapist in London and the one in Prague confirmed the reduction in tone. The best part is, unlike Botox, it’s permanent.
- It’s much easier to move and learn normal movement if muscles are not tight. The arms have especially benefitted as they were the tightest area. This will give Sierra better access to communication at this early stage, by touching picture icons of what she wants, playing with toys and later through a computer. All of which requires the arms coming forward and hands being open
Sierra’s vision has improved dramatically this year. She has gone from having no ability to focus to having almost normal vision. It’s as good as saying she was blind and now she can see!! In March we introduced +3 glasses and in July, contact lenses. The lens is supposed to entice the brain to learn to focus. This is progressive therapy compared with Australia and the UK but the Eye Doctor in Prague does this treatment with hundreds of children and is very surprised about the progress Sierra has made. When asked by our friend who was translating, “Really?”, the answer was “Really! Much more than the usual improvement, a real leap forward in her vision”.
- The exciting thing about vision is that communication really relies on Sierra being able to see and see well because she may not talk and if she does it may be delayed. With vision she can use a computer to communicate and this gives her access to normal schooling
- 80% of all movement in small children is learned from vision
Sierra’s mouth has gained better movement and control. Sierra’s type of Cerebral Palsy encourages her to extend. This means involuntarily pushing herself back and at the same time extending her arms and legs as well as her tongue. The tongue was previously in extension a lot of the time which is both unattractive and very limiting for learning to talk. Her tongue would almost always only go forwards in a thrusting motion or back into her mouth. It almost never made an up and down motion or side to side motion which is what you need to be able to talk. The pushing has greatly reduced all over the body and the tongue thrust has greatly reduced also.
- A chance at speech
- Better able to eat normal foods with more adult textures
- Better appearance, not looking as disabled
From working with the Physio in Prague and in London (both coming from different disciplines) we got great input in where to take Sierra next with the physio “home program”.
- We will be focusing on re-learning to roll. Sierra was rolling in October then went into hospital with a virus. At this time she stopped rolling and hasn’t rolled since. It was about this time that her epilepsy became more severe. Every time we tried the type of physio that focuses on rolling and crawling it gave her seizures. Tereza (Sierra’s physiotherapist in Prague) has shown us ways to work with Sierra that should allow us to treat her and not cause the seizures or not nearly as many. We are committed that she has some floor mobility.
- We will also be focussed on Sierra taking weight through her arms and legs, with the emphasis on the arms. If you imagine for a moment that you were disabled and I had to move you, think how much easier it would be if you could take weight through your legs and arms so you could hold your body for a few moments or minutes while I transition you from one position to another or actively push up with your arms to help me take your weight. Anel (Sierra’s physiotherapist in London) has been working with us last week to get Sierra to actively push up and hold herself with straight, strong arms. Serra is doing really well at this and her head holding is improving at the same time.
The fact that there has been a reduction in spasticity indicates that the stem cells found the damaged area and so we should continue to see improvements. Both Shane and I are very happy with the results and what we’ve accomplished.
Also, while in London Sierra became ill and that usually means a hospital stay. Shane and I took Sierra to A&E with our bags already packed, resigned that it was going that way. However, the doctors looked at Sierra and decided she was hydrated enough to try to get over it at home. We gave her rest, Vitamin C and Panadol and she managed to keep eating and drinking. Usually, I suppose because of the effort it is for her, Sierra’s mouth goes ‘on strike’, she gets dehydrated and we have to get her fed via a nasal tube until she recovers. This time she kept drinking and eating perhaps because of the better mouth control. It was such a WIN to have her turn it around. For the first time she turned an illness around herself!